When Your Child Has Experienced 140 Broken Bones in 5 Years

Snap! I gasp and turn my head as if I was moving in slow motion. My eyes widen and I immediately start to tear up. I just heard that scream. It’s the sound of agonizing pain. I’ve heard it over 100 times. It’s the sound of my son’s bones breaking — breaking from the things you and I take from granted every day, like trying to stand up, stretching your leg or even sneezing.

It’s the sound that every osteogenesis imperfect (OI) parent dreads to hear. My son was born with OI, more commonly known as brittle bone disease. He has already experienced over 140 broken bones in his short 5 years of life. My life changes every time I hear snap! I get confused, I panic and I run around the house looking for splinting materials and medication. I get overwhelmed and stressed out, but in the midst of chaos, I somehow pull it together. I have to. What other choice do I have? It’s become second nature to me. Medicate and splint.

Two years ago, I almost lost my son. He fell back from his booster seat while sitting at the kitchen table. He shattered his skull, resulting in him having an epidural hematoma and traumatic brain injury. The doctor explained to me that his skull shattered like a mirror. This was the worst day of my life. I felt helpless and defeated. I was living in my own worst nightmare. With the power of prayer and by the grace of God, which I believe provided some amazing neurosurgeons for him, my son survived. He survived with no residual effects. He is fun, loving, outgoing, smart and such a ladies’ man.

I have learned a lot through my journey. I now have the ability to adapt to change. I plan ahead and make sure my son’s life is enjoyable. I don’t see a child with a disability. I see a child who is strong and inspiring. Yes I said it, inspiring. He inspires me every day, and that’s OK. No matter what he goes through, he wants to make sure I’m OK. Me! He wants to make sure his siblings are OK, too. They have contributed to breaks, and during the tears and guilt they feel, he takes time to make sure they are OK. To have such compassion, affection and forgiveness is inspiring to me. I would be upset if my sister took a toy from my hand and my arm broke. I wouldn’t be thinking about their feelings, but he does.

It’s something as a family we struggle with. No one wants his bones to break. It’s like walking on eggshells sometimes. Being a sibling of someone with a life-altering illness can be overwhelming at times, but my children never complain.

My life may not be the way I imagined it, but I am blessed. I’m blessed to have five amazing, loving and thoughtful children. I’m blessed to live in a community that rallies around us. I’m blessed to have family and friends that support and pray for us daily. All I can do is continue to go through our daily routine of “our normal” the best I can. Everyone has a path and direction they can follow. The important thing in life is to actually wake up and live the life you were given. We are our own source of happiness, and I have to remind myself of this every day. I may not like the challenges I have had to face with my child, but I do make the decision to keep my head up and keep moving.

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Denise Goldhammer is a wife and stay-at-home-mother of five children. She is also a first-time author of “Perfectly Imperfecta: Conner’s Story Living With Brittle Bones.” She has one child with a rare illness called osteogenesis imperfecta, more commonly known as brittle bone disease. Denise shares her journey with in her most recent book. Her child can expect hundreds of fractures in his lifetime, but his spirit remains unbreakable. Despite a difficult path and many obstacles ahead, her family learns resilience, hope and faith. You can learn more about their journey by visiting perfectlyimperfecta.com.